I had just come home from work-a construction detail that had been hellish because it had rained the entire afternoon and evening. My hair was still damp from the shower, my shirt sticking to the damp skin of my back. Amelia was upstairs watching TV in our bedroom, and I had been holding a container of ice cream, eating right out of it with a spoon, when Piper and Charlotte came into the house. “Damn,” I said. “You caught me right in the act.” Then I realized that Charlotte was crying.
It never failed to amaze me how the most ordinary day could be catapulted into the extraordinary in the blink of an eye. Take the mother who was handing a toy to her toddler in the backseat one moment, and in a massive motor vehicle accident the next. Or the frat boy who was chugging a beer on the porch as we drove up to arrest him for sexually assaulting another student. The wife who opened the door to find a police officer bearing the news of her husband’s death. In my job, I’d often been present at the transition when the world as you knew it became the disaster you never expected-but I had not been on the receiving end before.
My throat felt like it had been lined with cotton. “How bad?”
Piper looked away. “I don’t know.”
“This osteopatho-”
“Osteogenesis imperfecta.”
“How do you fix it?”
Charlotte had drawn back from me, her face swollen, her eyes red. “We can’t,” she said.
That night, after Piper had left and Charlotte had finally fallen into a fitful sleep, I got on the Internet and Googled OI. There were four types, plus three more that had recently been identified, but only two of them showed fractures in utero. Type II infants would die before birth, or shortly after. Type III infants would survive but could have rib fractures that caused life-threatening breathing problems. Bone abnormalities would get worse and worse. These children might never walk.
Other words started jumping off the screen:
Wormian bones. Codfish vertebrae. Intramedullary rodding.
Short stature-some people grow only three feet tall.
Scoliosis. Hearing loss.
Respiratory failure is the most frequent cause of death, followed by accidental trauma.
Because OI is a genetic condition, it has no cure.
And
When diagnosed in utero, the majority of these pregnancies end in pregnancy interruption.
Below this was a photograph of a dead infant who’d had Type II OI. I could not tear my eyes away from the knotted legs, the shifted torso. Was this what our baby looked like? If so, wasn’t it better to be stillborn?
At that thought, I squeezed my eyes shut, and prayed to God that He hadn’t been listening. I would have loved you if you’d been born with seven heads and a tail. I would have loved you if you never drew breath or opened your eyes to see me. I already loved you; that didn’t stop just because there was something wrong with the way your bones were made.
I quickly cleared the search history so that Charlotte wouldn’t accidentally bring up the photograph when she was surfing the Net, and moved upstairs quietly. I stripped in the dark and slid into bed beside your mother. When I wrapped my arms around her, she shifted closer to me. I let my hand fall over the swell of her belly just as you kicked, as if to tell me not to worry, not to believe a word I read.
The next day, after another ultrasound and an X-ray, Dr. Gianna Del Sol met us in her office to go over the report. “The ultrasound showed a demineralized skull,” she explained. “Her long bones are three standard deviations off the mean, and they’re angulated and thickened in a way that shows both healing fractures and new ones. The X-ray gave us a better picture of the rib fractures. All of this indicates that your baby has osteogenesis imperfecta.”
I felt Charlotte’s hand slip underneath mine.
“Based on the fact that we’re seeing multiple fractures, it seems like we’re talking about Type II or Type III.”
“Is one worse than the other?” Charlotte asked. I looked into my lap, because I already knew the answer to that.
“Type IIs normally do not survive after birth. Type IIIs have significant disabilities and sometimes early mortality.”
Charlotte burst into tears again; Dr. Del Sol passed her a box of tissues.
“It’s very hard to tell whether an infant has Type II or Type III. Type II can sometimes be diagnosed by ultrasound at sixteen weeks, Type III at eighteen. But every case is different, and your earlier ultrasound didn’t reveal any fractures. Because of that, we can’t give you an entirely accurate prognosis-beyond the fact that the best-case scenario is going to be severe, and the worst case will be lethal.”
I looked at her. “So even when you think it’s Type II, and that a baby has no chance of survival, it might beat the odds?”
“It’s happened,” Dr. Del Sol said. “I read a case study about parents who were given a lethal prognosis yet chose to continue the pregnancy and wound up with an infant with Type III. However, Type III kids are still severely disabled. They’ll have hundreds of breaks over the course of their lives. They may not be able to walk. There can be respiratory issues and joint problems, bone pain, muscle weakness, skull and spinal deformities.” She hesitated. “There are places that can help you, if termination is something you want to consider.”
Charlotte was twenty-seven weeks into her pregnancy. What clinic would do an abortion at twenty-seven weeks?
“We’re not interested in termination,” I said, and I looked at Charlotte for confirmation, but she was facing the doctor.
“Has there ever been a baby born here with Type II or Type III?” she asked.
Dr. Del Sol nodded. “Nine years ago. I wasn’t here at the time.”
“How many breaks did that baby have when it was born?”
“Ten.”
Charlotte smiled then, for the first time since last night. “Mine only has seven,” she had said. “So that’s already better, right?”
Dr. Del Sol hesitated. “That baby,” she said, “didn’t survive.”
One morning, when Charlotte’s car was being serviced, I took you to physical therapy. A very nice girl with a gap between her teeth whose name was Molly or Mary (I always forgot) made you balance on a big red ball, which you liked, and do sit-ups, which you didn’t. Every time you curled up on the side of your healing shoulder blade, your lips pressed together, and tears would streak from the corners of your eyes. I don’t even think you knew you were crying, really-but after watching this for about ten minutes, I couldn’t stand it anymore. I told Molly/Mary that we had another appointment, a flat lie, and I settled you in your wheelchair.
You hated being in the chair, and I couldn’t say I blamed you. A good pediatric wheelchair was best when it was fitted well, because then you were comfortable, safe, and mobile. But they cost over $2800, and insurance would pay for one only every five years. The wheelchair you were riding in these days had been fitted to you when you were two, and you’d grown considerably since then. I couldn’t even imagine how you’d squeeze into it at age seven.